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Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders
Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framew...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Frontiers Media S.A.
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938310/ https://www.ncbi.nlm.nih.gov/pubmed/33692977 http://dx.doi.org/10.3389/fped.2021.635353 |
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author | Jansen, Marleen E. Klein, Anne W. Buitenhuis, Erika C. Rodenburg, Wendy Cornel, Martina C. |
author_facet | Jansen, Marleen E. Klein, Anne W. Buitenhuis, Erika C. Rodenburg, Wendy Cornel, Martina C. |
author_sort | Jansen, Marleen E. |
collection | PubMed |
description | Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framework was developed based on international NBS frameworks to gain insight in test properties, clinical findings, follow-up and implementation. A stakeholder process took place with implications for the planning of the expanded NBS panel. The evaluation framework progressed into a go/no go framework to start national screening, and is currently explored as basis for continuous evaluation of the NBS panel. The framework and stakeholder process may serve as an example for other programmes. |
format | Online Article Text |
id | pubmed-7938310 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-79383102021-03-09 Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders Jansen, Marleen E. Klein, Anne W. Buitenhuis, Erika C. Rodenburg, Wendy Cornel, Martina C. Front Pediatr Pediatrics Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framework was developed based on international NBS frameworks to gain insight in test properties, clinical findings, follow-up and implementation. A stakeholder process took place with implications for the planning of the expanded NBS panel. The evaluation framework progressed into a go/no go framework to start national screening, and is currently explored as basis for continuous evaluation of the NBS panel. The framework and stakeholder process may serve as an example for other programmes. Frontiers Media S.A. 2021-02-22 /pmc/articles/PMC7938310/ /pubmed/33692977 http://dx.doi.org/10.3389/fped.2021.635353 Text en Copyright © 2021 Jansen, Klein, Buitenhuis, Rodenburg and Cornel. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Pediatrics Jansen, Marleen E. Klein, Anne W. Buitenhuis, Erika C. Rodenburg, Wendy Cornel, Martina C. Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title | Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title_full | Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title_fullStr | Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title_full_unstemmed | Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title_short | Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders |
title_sort | expanded neonatal bloodspot screening programmes: an evaluation framework to discuss new conditions with stakeholders |
topic | Pediatrics |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938310/ https://www.ncbi.nlm.nih.gov/pubmed/33692977 http://dx.doi.org/10.3389/fped.2021.635353 |
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